Contents

  1. Introduction
  2. Questions to ask your GP
  3. Mental wellbeing
  4. Relationships
  5. Employment
  6. Housing
  7. Education
  8. Money
  9. Self-management
  10. Social prescribing
  11. Further support

Introduction 

About 15 million people in England have a long-term condition.

A long-term condition is an illness that cannot be cured. It can usually be controlled with medicines or other treatments.

Examples of long-term conditions include diabetes, arthritis, high blood pressure, epilepsy, asthma and some mental health conditions.

If you have more one than long-term condition this is ‘multi-morbidity’.

Long-term conditions can affect your job, family and finances.

However, there are many sources of support.

This leaflet is designed to help you understand what support is available and your rights.

Questions to ask your GP

Dealing with a long-term condition diagnosis can be overwhelming.

Below are some questions to ask your GP which can help you get the information you need.

They are just a guideline. If there is anything else you want to know, ask.

Diagnosis

What are my test results?

What do these results mean?

What will happen next?

What will I do?

What will my doctor do?

Where can I find out more about my condition?

Who can I contact for more information?

Support

How do I meet other people with the same condition?

Is there a local support group or national charity that provides information and support?

Practical

Is there equipment which could help me?

How do I get that equipment?

Self-management

Are there any self-management courses I can attend?

Are there any lifestyle changes I should make?

Mental wellbeing

A long-term condition can affect your mental wellbeing.

You may feel anxious or depressed some of the time, all of the time, or not at all.

Everyone is different. There is no need to be embarrassed about asking for help.

Support is available from Mind – mind.org.uk or 0300 123 3393 – and from national charities specialising in your condition.

Below are some tips which can help reduce your anxiety or improve your mental health.

Research

Understanding your condition can help it seem more manageable. Ask your GP or health care professional about where you can find reliable information. You can also refer to our ‘Finding trustworthy information online’ leaflet.

Tell people

You do not have to tell anyone about your condition if you do not want to. However, telling friends, family or colleagues can help them understand what you are going through.

Tell them what helps and ask for support when you need it.

Make time for yourself

Self-care is vital when living with a long-term condition. This is not just managing your medication. It also includes taking time to do something you enjoy.

Take control

Research shows those who take control of their own conditions feel better able to cope. This is called self management. Find out more about self management on section 9.

Relationships

You may find your role within your family or friendship group changes following your diagnosis.

If you were the person everyone relied on, it may be hard to accept you are the one who now needs support.

Your family, friends or carers may overestimate the amount of help you need. This can lead to a loss of independence.

One way to combat this is for you and your loved ones to learn as much as possible about your condition.

Involving your loved ones will help them recognise when you need help and when your independence should be respected.

Carers

Becoming a carer or accepting care from a loved one can put a strain on your relationship.

Carers UK is a national charity offering support to carers.

This includes practical advice as well as access to support groups.

Visit carersuk.org or call the helpline on 0808 808 7777 for more information.

Carers can also be eligible for financial support. See section 8 for more information.

Employment

Your long-term condition might mean you need to make changes to the way you work.

If this happens, you should talk to your employer.

You have a legal right to ‘reasonable adjustments’ under the Equality Act 2010.

If you have been off sick you should have a discussion with your GP about when to go back to work. If necessary, the GP can give you a ‘fit note’ advising of any changes the GP feels need to be made to your workplace.

What reasonable adjustments can I ask for?

The changes you might ask for include:

  • Changes to your workspace
  • Different working hours or flexible hours to support your work/life balance
  • Having more breaks
  • Specialised equipment
  • Going back to work part-time
  • Sharing work with others.

What if they will not make changes?

If your employer fails to make ‘reasonable adjustments’, it could be discrimination.

How can I find out more?

For more information on your legal rights visit citizensadvice.org.uk or contact your local Citizens Advice branch.

You may also be able to get support from your occupational health service at work.

Housing

A long-term condition may mean you need to make changes to your accommodation.

You can approach your local council if your home is not suitable for your needs.

An occupational therapist will assess what could be done to help you stay at home.

How do I pay for changes?

A Disabled Facilities Grant can help pay for changes like widening doors or improved heating in your home.

Can I get a Disabled Facilities Grant?

To get a grant you, or someone living in the property, must be disabled. Either you, or the person you are applying for, must:

  • Own the property or be a tenant
  • Intend to live in the property for the grant period of five years.

How do I apply?

Contact your local council.

How much will I get?

It depends on your household income and savings. You may need to pay towards some of the work.

Will it affect my benefits?

No. A Disabled Facilities Grant does not affect your other benefits.

What if I need to move?

If you are in council housing your occupational therapist can provide evidence on your behalf.

You may also be able to get help if you need a deposit for a private rented property. This is known as a rent deposit scheme. Contact your local council for more information.

Education

Children

Children with long-term conditions have the same rights as other children to go to school.

You should discuss and plan for the following with your school:

  • Medicines your child needs to carry and possible side effects
  • What emergencies may arise and how to deal with them
  • Special requirements, for example, diet or exercise, access to rest or toilet facilities
  • What will happen if your child needs to attend medical appointments
  • How they will keep up with schoolwork if they are too ill to attend or in hospital
  • Special arrangements for homework and exams.

Schools are not legally obliged to give your child medicine. If staff agree to do so they should be properly trained.

Students

If you have a long-term health condition you may need specialist equipment or support to help you make the most of your studies or training.

Under the Equality Act 2010, your education provider should make ‘reasonable adjustments’. Adjustments can include:

  • Alternative exam arrangements
  • Documents in your preferred format
  • Additional time to complete coursework
  • Timetable planning to avoid tiredness
  • Emergency arrangements.

You may also be eligible for a Disabled Students’ Allowance to help pay for specialist equipment or technology. If you are full-time you can apply at the same time as you apply for student finance. If you are part time, you can download an application form from gov.uk.

More advice is available at disabilityrightsuk.org.

Money

You may qualify for a range of benefits, tax credits, grants and concessions. These can help with anything from transport costs, to paying for a carer or housing benefit.

The most common types of financial support are below.

Personal Independence Payment (PIP)

Personal Independence Payments began replacing the Disability Living Allowance in 2013.

The payments are for people with long-term ill health or a disability. You must be between 16 and the state pension age to claim.

You will be assessed by a health professional. The amount you receive depends on how the condition affects you.

Attendance Allowance

An attendance allowance is available if you have a disability severe enough that you need someone to help look after you. You must be at state pension age to claim.

How much you get depends on the level of care you need. It does not cover mobility needs. You do not have to have someone caring for you to claim.

Carer’s Allowance

If you receive certain benefits and someone cares for you for at least 35 hours a week they could be eligible for a Carer’s Allowance.

Full details on how to apply are available at gov.uk.

Self-management

Research shows people with long-term conditions who take more control of their health:

  • Are more able to cope with their health problem
  • Have better pain management
  • Experience fewer flare ups
  • Have more energy.

Self-management is taking responsibility for managing your condition in partnership with healthcare professionals. It involves:

  • Finding out more about your condition
  • Learning new skills to help you manage your health
  • Working in partnership with your health team
  • Choosing what is right for you.

You have the right to be involved in your care. Your healthcare professional should support you by providing information or helping you gain the skills you need. See Self-management for more information.

Why does it matter?

Knowing what options are available will give you the confidence to understand when to manage your own condition and when to ask for help.

People who are involved in their care tend to have better health, better outcomes and need less emergency care.

How can I find out more?

The Expert Patient Programme is a free NHS course for anyone living with a long-term health condition. Details can be found on your local hospital website or by contacting the Patient Advice and Liaison Service. Several large charities also offer self-management courses.

Social prescribing

Social prescribing recognises not everything can be solved with a tablet.

It aims to help you find local activities which can increase your health and wellbeing.

It is also known as ‘community referral’.

How does it work?

There are different ways of working across the country.

In most cases, a GP, nurse, or other healthcare professional will refer you to a link worker.

The link worker will help you work out what matters to you. They will then help get you involved in activities in your local area.

They can also connect you with other services offering practical and emotional support.

What activities does it include?

Activities are varied to suit different people’s needs. They might be volunteering, arts, group learning, gardening, or sports.

Who runs the groups?

Activities are usually run by charities and community organisations.

Who is social prescribing for?

Anyone with social, emotional, or practical needs. It is considered particularly useful for people at risk of becoming isolated.

Can I access social prescribing?

Around 60% of clinical commissioning groups in the UK now offer social prescribing. The number is growing.

Further support

Below are some useful websites where you can access further information and support.

If you do not have internet access, you can visit your local library or call our helpline on 0800 345 7115.

Your pharmacist can also give you advice on managing your medicines. See Understanding your medicines for more information.

asthma.org.uk – asthma information

bhf.org.uk – information on heart disease

carersuk.org – support and practical information for carers

citizensadvice.org.uk – legal advice

diabetes.org.uk – advice and support on diabetes and self-management courses

england.shelter.org.uk – advice on wide range of housing issues

epilepsy.org.uk – epilepsy information

habinteg.org.uk – social housing provider specialising in accessible homes

macmillan.org.uk – cancer information

mind.org.uk – mental health support and advice

mstrust.org.uk – multiple sclerosis information

righttoparticipate.org – advice on discrimination and your rights

versusarthritis.org – arthritis information

Sources

Source material for the information contained in this leaflet is available on request.

Contact the Patients Association helpline

The Patients Association offers a free national helpline providing specialist information and advice to help patients make sense of their health and social care.  

Patients can talk directly to trained advisers in strict confidence about any concerns, questions or general experiences they have regarding the NHS and social care systems.  

The helpline is open from 9.30 am to 5pm, Monday to Friday, and calls outside these times are returned as soon as possible during opening hours. 

If you would like to contact the helpline, please call free on 0800 345 7155, or visit the Patients Association helpline page on our website for more information.